Robert Gross
Forum Replies Created
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The term “life span” is often used incorrectly. The actual term should be “average life expectancy” which normally quoted base on a specific age. E.g. the average life expectancy of an American male AT BIRTH is around 76 years. However, the average life expectancy of a 80 year old male is close to 88. The AVERAGE person will likely live that long; some will die sooner, some way later. Saying 5 years doesn’t actually tell you much except that you have about a 50% chance of living that much longer or more.
It is scary but not definitive. I found tables that note that 20-25% of patients live beyond 10 years.
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Can you give some suggestions on finding a national provider? Or names?
I did a Google search on “National Oxygen Providers” but I’m not sure I’m finding anything worthwhile. I have a portable oxygen concentrator which I can use while traveling but I would like a continuous flow one while on vacation. They have been difficult to find and what I found was rather expensive.
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As far as I know the only alternative is Esbriet, which didn’t work for me so I’m back on OFEV. It’s been over 6 year. I have the usual GI issue but not nausea. However, the GI issues and loss of appetite meant that I’ve lost about 85 pounds.
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Some 10-12 years ago I was diagnosed with that. After getting rid of our birds, plus therapy, I got over it for a couple of years, then started again. This time it was diagnosed as IPF (7 years ago.) My current pulmonologist says that a) it is a know precursor to IPF and b) treating it may prevent it progressing to IPF.
I noticed that the Wikipedia article on it now says it can lead to IPF.
Good luck with it.
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Rene, my experience is like yours. I was on OFEV for 6 years and my tests remained pretty stable. I did have the usual side effects and lost some 75 pounds, not that I didn’t need to.
At the end of last year my insurance told me I had to switch to Esbriet. I did – it caused the opposite side effect of OFEV – serious constipation.
In 4 months my PFT declined by 5% and my pulmonologist got me back on OFEV and I don’t seem to be declining.
My understanding is that one or the other drug works best for a given individual. Unfortunately there is no test to tell which.